End of Life Ethics: A Primer

Would You Want to Live that Way?

That’s the challenge I've heard a number of times from advocates of starving Terri Schiavo to death. It usually comes in the conversation when what they’ve offered so far in the way of justification has been refuted. It’s a rejoinder of last resort, but since it’s offered purportedly as an argument, let me take it seriously.

Would you want to live that way?

No.

But what follows from that?

I suppose the "argument" is supposed to go this way: Would you want to live that way? "No." Then you shouldn’t live that way and neither should Terri Schiavo. But that’s a non sequitur — it doesn’t follow. Just because I don’t want to live that way, doesn’t mean I shouldn’t or wouldn’t live that way if that’s the condition I found myself in. The challenge doesn’t provide any justification. It certainly doesn't provide any justification for imposing the conclusion on someone who can't speak for herself. And, in fact, it's a dangerous premise to accept.

The challenge is based on the "quality of life" view, which has to do with two easily understood ethical categories: intrinsic and instrumental value.

Something has instrumental value because it’s an instrument of obtaining some other end that is valuable. Something with instrumental value isn’t valuable in and of itself, but is only valuable if it gets you the other object with value. It’s a means to an end. Money is an example of something with instrumental value. It’s paper or metal, or even shells, or something else that is exchanged for something else you want. Nobody holds onto money for its own sake. We earn and accumulate money in order to buy groceries and pay the rent, in order to feel secure, or maybe to obtain satisfaction from being the most successful as measured by money. When money doesn’t do its job as an instrument to obtain the valued end, it loses its value. Confederate currency after the Civil War had no value at all because it couldn’t get anything else. Nobody wants a pile of valueless paper.

Intrinsic value is very different. Things with intrinsic value are valued for their own sake. They don’t have to achieve any other goal to be valuable. They are goods in themselves. Beauty, pleasure, and virtue are likely examples. Family and friendship are examples. Something that’s intrinsically valuable might also be instrumentally valuable, but even if it loses its instrumental value, its intrinsic value remains. Intrinsic value is what people mean when they use the phrase "the sanctity of life."

Now when someone argues that someone doesn’t have "quality of life" they are arguing that life is only valuable as long as it obtains something else with quality, and when it can’t accomplish this, it’s not worth anything anymore. It's only instrumentally valuable. The problem with this view is that it is entirely subjective and changeable with regards to what might give value to life. Value becomes a completely personal matter, and, as we all know, our personal interests change over time.

There is no grounding for objective human value and human rights if it’s not intrinsic value. Our legal system is built on the notion that humans have intrinsic value. The Declaration of Independence: "We hold these truths to be self-evident, that all men are created equal, that each person is endowed by his Creator with certain unalienable rights...." If human beings only have instrumental value, then slavery can be justified because there is nothing objectively valuable that requires our respect. There is nothing other than intrinsic value that can ground the unalienable equal rights we recognize because there is nothing about all human beings that is universal and equal. Intrinsic human value is what binds our social contract of rights.

So if human life is intrinsically valuable, then it remains valuable even when our capacities are limited. Human life is valuable even with tremendous limitations. Human life remains valuable because its value is not derived from being able to talk, or walk, or feed yourself, or even reason at a certain level. Human beings don’t have value only in virtue of states of being (e.g., happiness) they can experience.

The "quality of life" view is a poison pill because once we swallow it, we’re led down a logical slippery slope. The exact same principle can be used to take the life of human beings in all kinds of limited conditions because I wouldn't want to live that way. Would you want to live the life of a baby with Down’s Syndrome? No? Then kill her. Would you want to live the life of an infant with cerebral palsy? No? Then kill him. Would you want to live the life of a baby born with a cleft lip? No? Then kill her. (In fact, they did.) Once we accept this principle, it justifies killing every infant born with a condition that we deem a life we don’t want to live. There’s no reason not to kill every handicapped person who can’t speak for himself — because I wouldn’t want to live that way. This, in fact, is what has happened in Holland with the Groningen Protocol. Dutch doctors euthanize severely ill newborns and their society has accepted it.

Would you want to live crippled, unable to walk? No? Then kill Franklin Roosevelt the summer he contracted polio. Would you want to live as a quadriplegic? No? Then kill Joni Erickson Tada as she lay in her hospital bed after her diving accident. But, you say, they've lived productive lives, accomplished great things. True, they have, but that's treating their value as mere instruments. Would it be okay to kill them if they hadn't accomplished good things? I suspect that many of us would not want to live that way despite what they've accomplished, but that doesn't mean it would be okay to kill them.

A variation on "Would you want to live that way" is usually offered when the fact is made clear that Terri isn't dying, that this isn't a "right to die issue," but a "right to life" issue: "That's not living." Well, by every medical measure it is. What they mean is that she doesn't have the quality of life we'd all prefer to have. This is simply the same poison pill that views life as instrumental value rather than intrinsic.

Terri is a valuable human being as she lies in bed. Terri is a valuable human being even if she never recovers. Her right to life that derives from her intrinsic value must be protected.

Would I want to live that way? No. I pray for God's mercy that I never will. But no justification follows from this challenge that justifies killing Terri Schiavo. It’s a mere assertion. And it asserts an idea that is very dangerous.

Does Terri Have a Right to Die?

Terri Schiavo’s husband claims that Terri expressed her desire never to "live this way." Her case has been described as the "right to die." But Terri isn’t dying. Killing her has been described as the "merciful" thing to do for her. All of these characterizations are popular expressions of some ethical categories that I think are important to understand in order to know what the right thing to do is.

"Terri didn’t want to live this way." That is an imprecise expression of the autonomy principle, which is the idea that human beings are free to make their own choices regarding their own lives. We may not always approve of the choices, but respecting an individual’s autonomy in general is an important principle. But the autonomy principle doesn't get you the "right to die." At most, it justifies voluntarily refusing treatment when there is no obligation to provide it. There is no "right to die." The "right to choose" is another expression of the autonomy principle that was enshrined in Roe v. Wade, and now underlies the claim that Terri has a right to choose her death. But autonomy doesn't permit any and every choice. That's why some precision is important in discussing the issues raised by Terri Schiavo's case. Without precision, we might make fatal mistakes.

In cases of taking someone’s life, there are three forms of consent: voluntary, nonvoluntary, and involuntary. Voluntary "euthanasia" is when a competent, informed patient requests death under certain circumstances. (I actually dislike the word "euthanasia," which means "good death," because it is usually a euphemism for something very insidious.) Living wills and advance directives are attempts to honor voluntary, autonomous wishes. In nonvoluntary "euthanasia," a patient is incapable of expressing that desire (e.g., newborn, incompetent adult). Involuntary "euthanasia" is when a patient expresses a wish to live, but is still killed.

There’s also an important distinction between active and passive "euthanasia." Active "euthanasia" is the direct, active, and intentional taking of human life when the patient isn’t dying, an intervention to bring about death when death is not imminent. Passive "euthanasia" is allowing someone to die, permissible under certain circumstances. There is no intervention to take life, though death may be foreseen.

An example of passive "euthanasia" is refusing treatment when it’s futile and provides little or no hope of success. Almost exactly five years ago my father was diagnosed with advanced pancreatic cancer. The oncologist told us that chemotherapy would prolong his life, but not save it. So we all agreed to let the dying process take place and care for him until he went to Heaven on Good Friday four weeks later. The conditions for our decision were clear: He was dying and there was no effective treatment.

It’s very important to understand whether someone is referring to active or passive "euthanasia," because it’s a critical ethical distinction in cases like Terri Schiavo’s.

With these ethically important categories in place, there are six distinct categories of "euthanasia," each with its distinct moral obligations:

2. voluntary/passive--allowing someone to die at their request (e.g., "Do not resuscitate" and "No heroics" medical orders, durable power of attorney)

3. nonvoluntary/active--taking the life of someone who is unable to express her wishes (e.g., injecting a deformed infant or a senile adult with a fatal drug, or removing morally obligatory care, like a feeding tube)

4. nonvoluntary/passive--allowing someone to die who is unable to express their wishes (e.g., an infant with anencephaly or a stroke victim who is brain dead)

5. involuntary/active--taking someone's life against their expressed will

6. involuntary/passive--allowing someone to die against their will

Some of these are ethically acceptable and others are not. Involuntary active "euthanasia" is always unethical and illegal in the United States. Voluntary/passive and nonvoluntary/passive may be ethically acceptable if there is no obligation to give medical treatment to the ailing patient in that case. Voluntary/active is not ethical and the law should not advocate it. Nonvoluntary/active "euthanasia" is unethical and should be illegal because it intervenes to cause death without knowing what her wishes are.

Terri’s circumstance is a case of nonvoluntary/active "euthanasia." She is being killed when her wishes are unclear. Her husband claims she has expressed her desire, but at best it’s uncertain. She left no advance directive. Whatever her wishes may have been years ago, it isn’t necessarily helpful in deciding what she wants or would want now. Some of those close to Terri report that she has reacted to the removal of her feeding tube and expressed a desire to live, but her verbalizations are very indistinct.

A conclusion is hard to come to based on the nonvoluntary distinction, but it is crystal clear when it comes to the active distinction. Terri isn’t dying, so someone has to intervene to cause her to die. Terri has survived for 15 years in her current condition; she will likely live for many more years if she’s given the minimal care that all living things need to survive — nutrition and hydration.

This isn’t a case of respecting an autonomous decision. When Terri can’t make her wishes clear and she is not dying, the ethical, the humane, the legal recourse is to favor life. This is not a "right to die" case; it’s a right to live case for a woman facing active "euthanasia." When people defend "the right to die," they seem to be saying that the benefit of the doubt should dictate death. Perhaps that’s so in some cases of nonvoluntary/passive "euthanasia," but not in this case of nonvoluntary/active "euthanasia." Some people say, "Maybe she didn’t want to live this way." "Maybe" isn’t good enough in nonvoluntary/active cases. An ethical, civil society should always favor the life of the innocent human being. A handicapped woman deserves our protection, not intervention to cause her death.

Some decisions are wrong no matter who makes them. Being a husband doesn’t give a man authority to cause the death of his wife. Any "guardian" who attempts this should automatically be disqualified.

Nonvoluntary/active "euthanasia" unjustly takes a human life, no matter who decides it. The government should never let an innocent life be intentionally taken by anyone without proper justification. A judge’s opinion is not enough. When the judiciary allows a husband to kill his own wife, the legislative and the executive branches of our government must intervene to check the inappropriate power exerted by the judiciary.

Michael Schiavo’s right to decide for his wife does not trump Terri Schiavo’s right to life. The government’s job is to protect the right to life, not the so-called right to death.

Is a Feeding Tube Extraordinary Means?

Here are the final ethical issues that lay the necessary foundation before concluding whether Terri Schiavo’s husband has the right to remove her feeding tube. There are other issues and ideas that are part of the discussion, but I’ve tried to present the fundamentals. Most other questions and challenges can be decided using these tools.

The next distinction has to do with the kind of treatment Terri is receiving. Is it ordinary or extraordinary? Here’s how you decide. "Ordinary means" are medicines, treatments, and operations that offer a reasonable hope of benefit without placing undue burdens on the patient. An example would be providing insulin to a diabetic, or performing surgery to correct a cleft lip for a newborn. Ordinary means are obligatory to provide; it’s never morally justified to withhold or withdraw ordinary treatment.

"Extraordinary means" of treatment are those that involve excessive burdens on the patient and don’t offer reasonable hope of benefit. Extraordinary means aren’t obligatory so they can be withheld or withdrawn.

I just used some "weasel words" that can be a little difficult to apply in some unclear circumstances. "Reasonable hope" and "undue burden" might be judged differently in some difficult cases because we can’t always reasonably predict the outcome. Sometimes doctors just can’t predict what the outcome will be or how a patient may respond. The chances of a successful surgery might be 50/50. Most often the times it’s hardest to evaluate "reasonable hope" and "undue burden" in end of life scenarios. So there are some circumstances that are difficult to navigate. But in the vast majority of medical cases--and, I would contend, in Terri’s cases--these terms provide guidance on how to evaluate the treatment.

This leads me to an important caveat. These medical judgments pertain to the types of treatments for individual patients, not to the patients themselves. The treatment is an undue burden, rather than the patient is a burden. The treatment provides reasonable hope of accomplishing its medical goals, rather than the patient having a reasonable hope of accomplishing her personal goals. The quality of life of the patient is not the issue because the patient is an intrinsically valuable human being regardless of her life’s quality.

The final distinction is between malfeasance and nonfeasance. There is little moral difference between withholding or withdrawing medical treatment. Withholding treatment is preventing treatment that has not yet started. Withdrawing treatment is stopping treatment that has already begun. If a treatment isn't morally obligatory to begin with, then it's okay to withhold and/or withdraw it; and if a treatment is morally obligatory, then treatment should neither be withheld or withdrawn. That is the legal distinction between malfeasance and nonfeasance. Malfeasance is doing that which should not be done, an active notion. Nonfeasance is failing to do that which should be done, a passive notion. What is morally relevant is whether or not treatment is obligatory in its own right, not whether our actions toward a patient are active (withdrawing) or passive (withholding).

If medical treatment is not obligatory, it can be withdrawn or withheld. This was the case with my father who had pancreatic cancer. Treatment provided no hope and would have been burdensome to him, therefore there was no obligation to provide treatment, and if provided there was no obligation to continue. This is also the case with a massive stroke patient who is kept alive only by machines; the machines can be removed and the patient allowed to die.

Conversely, if it is obligatory to provide treatment, then it cannot be withdrawn or withheld. You can’t fail to give CPR to a drowning child. You can’t take away medication from a heart patient.

Food and water aren't extraordinary treatment, even if delivered through the artificial means of a tube; they're normal care. Feeding through a tube is not unduly burdensome and certainly holds reasonable hope — for all human beings. People in dependent circumstances rely on others to feed them. Babies and quadriplegics need to be fed by others or they’ll die. Someone with a broken jaw has to eat prepared food through a straw. They’re simply different modes of delivering what is basic to everyone’s survival. If they’re taken away, the only intention can be to cause death because removal creates sufficient conditions for death where they don’t otherwise exist. The difference between a respirator, for example, and a feeding tube is that the respirator substitutes for a body function that is no longer working, while the feeding tube doesn't; it simply is a delivery system.

Judgments about food and water usually turn out to be evaluations of ordinary and extraordinary patients, not of ordinary and extraordinary treatment. Nancy Cruzan was diagnosed to be in a "persistent vegetative state" and her life was judged unworthy of living, so her food and water were removed. She died of starvation, not of her injuries or disease.

The same is being said of Terri now. She doesn’t have an adequate "quality of life," so her nutrition and hydration have been removed. But Terri is handicapped, not terminally ill. She will die of starvation, not of injury or disease.

Terri’s husband claimed on "Larry King" Monday night (March 21, 2005) that she won’t die of starvation. It’s a "natural" death. Well, starvation is natural for anyone who isn’t permitted to eat, but it’s still starvation. What is morally offensive is that it is not humane. It is neither natural nor peaceful, as some claim. If death row inmates were left to starve in their cells, it would be "cruel and unusual," not natural and peaceful.

Often patients in the final stage of dying will stop eating. In those cases, nutrition and hydration are almost always considered extraordinary treatment because it serves no purpose. Death is imminent and the body is shutting down. In that case the person dies of the disease, not starvation.

Food and water offer reasonable hope of benefit with little burden to any patient who isn’t dying, as it does to all of us. Removing the tube that supplies food and water is no different than placing a pillow over her head to remove the supply of oxygen. It deprives her of a fundamental requirement for life.

Sometimes severely injured patients can eat, but have to be fed slowly by nursing staff. It’s time-consuming and puts demands on limited staff. Sometimes it’s so slow and difficult that the patient doesn’t get adequate nutrition. So they insert a feeding tube as a more efficient means of delivering nutrition.

Several years ago Greg Koukl was speaking at a local church about "The Death of Humanness," in which he describes the consequences of the erosion of human value. Two people approached Greg after the lecture and introduced themselves as Nancy Cruzan’s aunt and uncle. They told him that Nancy had been able to swallow and eat, but that it was a slow process, so a feeding tube was inserted. Her aunt and uncle pointed out that eating was one of the few pleasures Nancy had left after being incapacitated by an accident. Later, that feeding tube was deemed by a judge as an extraordinary means of keeping Nancy alive. It was removed and Nancy died of starvation and dehydration.

Terri Schiavo was once able to eat soft foods. But for the very same reasons as Nancy Cruzan a feeding tube was inserted. What is outrageous is that the tube, inserted to make a nurse’s job easier, is then judged to be an extraordinary means of keeping her alive.

Here’s how all of these ethical considerations work together (blog entries 3/21-23/05). Human beings with intrinsic value have a right to life that must be protected unless there is proper justification to take it. The presumption falls to life, and the burden of proof is on death. Quality of life issues treat human beings as mere means to ends. Nonvoluntary/active euthanasia--what Terri is facing--is unethical and should not be legally permitted because it is actively, intentionally causing a death when patient’s wishes cannot be determined. Nutrition and hydration delivered through a feeding tube is ordinary medical care that offers reasonable hope of benefit with little burden to the patient, so it should not be withdrawn or withheld.

Terri Schiavo is a human being with intrinsic value despite her significant handicaps. Her wishes are unknown, or at best unclear. She’s not dying, so removing her feeding tube is not an "end of life" issue in the normal sense of the phrase; it’s intentionally taking her life. It’s morally obligatory to provide ordinary, medical care for Terri, so her feeding tube should neither be withdrawn or withheld from her.

Some question why so many of us are up in arms and want to intrude ourselves in a "private" matter. Here is why. Because taking someone’s life is never a private matter. Because the intrinsic value of one innocent human being is so great we should all care when Terri’s life is taken from her unjustly. Because how we treat the "least" among us reinforces the most basic value of our country: human dignity. Because the law is supposed to serve justice not just proper procedure, and judges don’t always get justice right.

Because the right to life is one of the most fundamental features of our law and social contract, and each violation chips away at the foundation that protects us all.